What is your honest opinion of Autism Speaks?

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I am asking because just recently I was doing a little class training session on Autism for a local group that does camps for disabled people and they have a lot of Autistic people in their camp. I had been doing training for them teaching them about Autism by using examples of my own life an explaining concepts to them that could help them understand their campers better and make camp a much more wonderful experience than it already is. I was not being paid at all and just doing this out of the goodness of my own heart. In fact, not only was I not being paid, but I had to leave a project early to make it on time for them and lost two hours of pay on that project for leaving early and this group was not willing to reimburse me. Then when I got there they did not even have a chair for me, I had to go get my own chair, they did not have water even though it was like 90 degrees outside and they knew I was coming from the project directly, and they were rude to me when I walked in. And I had done a training for them last year which they had loved. I was also not paid for that and when I asked for a thank you letter for my portfolio for last year, and last year they had promised me letters of recommendation which they never gave me, I was told that before I can get a thank you letter for last year, let's see how this year goes.

During my class this year, a young girl, camp counselor, was wearing an Autism Speaks tshirt. When I saw it, I actually became sick to my stomach. I am black and I think that I would have felt more comfortable if she had worn a Ku Klux Klan Speaks tshirt. I asked her if she would be willing to turn it inside out. She said that her brother is Autistic and that Autism Speaks has really helped their family so let's just agree to disagree. So of course I was very cordial and pretended that I was happy to do so and went on with my class with that shirt staring me in the face the whole time. She did step out of the room for about 10 minutes and came back with her shirt still on right side out. So I don't know if she stepped out because I offended her. I was afraid that I had offended her so I sent my greatest apologies to her afterwards. Now if someone had asked me to turn my shirt inside out, I would have. I don't need to know the details or to understand but if someone is so sensitive to the writing on my shirt that they ask me to turn it inside out, and they cannot just get up and leave my presence, I would be happy to do that for them. After all, really, what would it hurt to be considerate to someone else's feelings?

But when the boss found out what happened, I was told that I should just understand that just because I am not a fan of Autism Speaks, I should still accept that Autism Speaks might have really benefitted this family and others. I am not arguing with that at all, I am just saying that if someone were so disturbed with my tshirt that they asked me if I would please turn it inside out, I would have gladly done that for them.

But I am asking you guys this question, am I justified in how I feel about Autism Speaks. Do you guys think that the fact that that shirt made me sick to my stomach is justifiable or was I overreacting and not being fair? Please be very honest. I welcome all opinions and will consider all of them and if I am wrong in how I feel, I will change if you can show me that I am wrong.

Thank you

Well, they DO get some nice research done...but the Fascists in Italy did have nice uniforms too.

Autism Speaks is a front, and a front with a dangerous back.

I think the nonsense about "curing" autism is, well, nonsense. We need therapies, not ABA, for the low-functioning, and us high-functioning/Aspergernauts would prefer to be left alone & treated without discrimination or patronizing condescension.

Also, I had heard that they were trying to develop a genetic prenatal diagnosis for autism-spectrum disorders.

Prenatal diagnoses have nearly wiped out our brothers and sisters with Downs' syndrome through abortion.

I don't want selfishness to rob autistic people of their lives, either. As long as it's got 46 chromosomes I'm going to fight for its right to exist, even if it's a recently fertilized human egg...

They say "well, if they're going to have rough lives, it's more merciful to keep them from suffering," and weep a sincere but misguided tear, and move on. But I already had a rough life. Let's see: attempted murder, moving out of home before 17, difficult time even finding a home in my religious community, going out in public causes physical pain, suicidal depression (and ready access to fire-arms didn't help. Fortunately I had philosophy textbooks and some hot jazz records from the 1920s on hand or I might be dead) and a worry about the constant drip, drip, drip of criticism about everything I did, how I looked, what I wore, how I prayed, where I walked, how I talked--death seemed preferable to life.


Now I'm doing fine.

It can get better. People have gone through a LOT worse than I have.

Let's not hurt autistic people any worse than life already does. Stay strong. Enjoy yourself--it's in you, even if you're depressed.

I have a very negative view of Autism Speaks as well and for a number of reasons. I welcome being corrected if any of the following reasons are inaccurate:

They are among many other non-profits or charities where administration swallows up nearly all the funds and contributions they receive leaving little to any resources for people with autism. From my understanding, the Autistic Self Advocacy Network ASAN is the opposite in this regard.

Autism Speaks to my knowledge doesn't have any autistic people in prominent, key or influential positions within the organization.

Funds raised by local communities such as "Autism walks", etc are funneled to the Autism Speaks organization. The contributions made by local people in communities are removed from those local communities and there is nothing given in return in regard to aid, assistance or resources to help people with autism in those very same communities (see bloated administration above). This is money that could be used in said local communities as resources to help autistic people.

Autism Speaks seems to me to have the message and goal of "curing" autism. A message that there is something wrong with people who have autism and that science should find a "cure" for neurodiversity and that the world, communities, families and individuals would be better if everyone were neurotypical.

It's for the reasons above that I'm very strongly opposed to what Autism Speaks stands for and how they operate. As an autistic person, Autism Speaks actually feels like an adversary to me rather than an ally.

Regarding your t-shirt situation: Again, my opinion. You can see based on what I've written above that I would feel upset seeing a t-shirt like you did for the reasons I've stated. I believe I would have taken appropriate opportunities to voice my opposition to Autism Speaks and I would have left it at that. I would not have gone to the level of asking the person to turn her t-shirt inside out. Not because I would have been afraid to ask. Instead because I'm a fierce proponent of free speech and the expression of ideas even if the ideas disturb me and I'm against them personally.

There are people who ascribe to veganism on a quasi-religious level. I was a vegan for about three years many years ago. I haven't been since, but I absolutely respect and support someone's decision to be a vegan.

As an analogy, I'm thinking of an event focused on health and wellness somewhere. If someone was wearing a t-shirt that depicted eating meat in some way (e.g. maybe a t-shirt about a favorite BBQ restaurant or burger joint), such a shirt could upset certain vegans in a visceral way and would be utterly counter to the vegan's deeply held and very real conviction. It would be out of line in my opinion for the vegan to ask the person with the meat related t-shirt to turn the shirt inside out. The focus of the event would be health and wellness. The vegan would believe that veganism is the clear and correct path to health and wellness. The meat eater might believe that eating meat (e.g. farm raised organic grass fed beef, pork, etc) can be part of a healthy lifestyle. Both are entitled to their own opinion.

I can't stand it and would of also felt sick.

They are responsible for most of the crap we have to put up with. They use fear mongering to make money. It is a horrible thing.

Thank you for responding. I hope many more of you will respond. I want to make absolutely sure that my feelings are justified. If they are not I will change.

Magna, I agree with you 100%. I would have never asked her to turn her shirt inside out if I was a member of the audience or just at an event with her and she happened to be wearing that shirt. The reason I asked her to turn it around is that I had to teach this class with it staring me in the face and I had just come from a super overwhelming ordeal which landed me in the hospital and I had had no sleep for almost 72 hours. I will tell you all about that in a different post. But I was already extremely traumatized from what I had just literally gone through and critically overwhelmed and what I had gone through was massive bullying and being taken advantage of because of my autism. It was so traumatic that I ended up in the hospital on a 302. I had literally just gotten out of the hospital, gone to work and then gone straight to help on this project, lost money from the project to come and teach them, and then had to deal with their rudeness and then have this tshirt in my face the whole time. I had to now muster up the energy to teach this class and they were being so rude to me about teaching them. I just felt that this shirt staring me in the face was just too much to bear. That is the only reason I asked if she could please turn it inside out.

They should let people with autism speak.....

I don't like them at all. I don't like the way that they use the money that they raise. I don't like the fact that the only thing that they're interested in is a cure and a world without autism. I don't like how they view us as a bunch of defectives who ruin life for our families. I hope they go under.

Autism Speaks is basically a hate group, and deserves to be treated as such.

Well Idk maybe they should actually let autistic individuals speak, instead of trying to speak for them. Sure its nice to have sympathy based charity organization but when its not actually helping the people you're trying to be charitable to, then its just conceited assholery groups trying to speak for people they don't even understand.

And that sort of seems like what autism speaks is, I mean how many autistic speakers does 'autism speaks' have l You'd think a group with a name like that might want to help give a voice to autistic people, but instead they just want to talk over actual autistic individuals to tell them what is best for autistic people with no understanding of how we feel or think...just mantras of 'we must find the cure, and oh the poor autistics and their impending doom'. Like I know negativity can be addicting but stop with the depressive crap all the time, what about. But I am certainly not here just for people to go 'oh, poor thing' to feel better about themselves because they experienced pity for someone like oh hang an award on their neck because they felt bad for an autistic person one time on the bus or whatever, but if an actual autistic person has something to share certainly just ignore them. That is the impression I have of autism speaks, like thats nice you think you speak for autistic people its cute but its kind of a lie when autistic people have no say in autism speaks.

Honestly? It's just one of the many things that reminds me why I don't like humans; why I can't trust humans well and how easy it is to manipulate them.

It shouldn't be a real influence from where I live overall. Attitudes and approaches are different here, not just autism but towards disabilities as whole.


And as something influential from the West it's more or less a source of fact -- if it gives facts, or misunderstandings all because that's how the Western world portrays it combined with colonial mentality... The misunderstandings clashes hard with the family-oriented culture, that may or may not make things worse.

The more modern the place, the more likely the influence.
There's the pro and con -- the pro's would only weigh more if the household is competent enough to see and know sides more than just the 'known' view of autism from wherever said influence came from.

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Thank you so much for your posts. I would like for as many people as possible to honestly speak their opinions on this matter. I would like to send this thread to the boss of the organization because when he found out about the shirt thing, he told me that I should understand that I might not be a fan of an organization but that organization may have greatly benefited other people so I should be understanding of that. And honestly, I completely respect that perspective and even agree with it. But in this case, I think he just does not understand what Autism Speaks is and I would like him to understand. He basically that I should just agree to disagree about what I feel that Autism Speaks is and what they do. I know that nothing I actually say to him verbally will help him understand how Autistic adults feel about Autism Speaks. That is why I want you guys to post here so that he can read your own words.

Not good at all

All the research I've done suggests that AS is a scam that ends up being a hate group.

A few posts back, someone asked if there were any autistic people in AS. My research indicated that there are none. Zero.

Going to leave it there, lest I start a long rant.

I do not believe AS speaks for autistic people, and if they think they do they're sorely mistaken.

I used to think of them as an existential threat to autistic people because they were and are powerful and influential, their anti-vax, curebie views, and their fundraising videos portraying autism as Satanic like.

In the last 3 years founder Suzanne Wright died, founder Bob Wright resigned as CEO, they dropped cure from their mission statement, added 3 autistic board members and post blogs by Autistic people. Many autistic people view these changes as a smokescreen and while "cure" has changed to "solution" skeptics see "solution" as a code word for the final solution of autistic people.

The constant lobbying for ABA and their partnership with google on the database with the offensive name #MSSNG is evidence the skeptics are correct. As much as I despise the prior, the changes have been too much for me to dismiss it as all cosmetic. We do need a much more thorough investigation as to where their money is actually being spent.

While I may not view them as an existential threat any more I still find key elements of what they do abhorrent. If they are to begin to aleve fears that they have changed there ways at a minimum an apology for all the horrible misinformation they spread about us is in order.

ASpartofme, this is really good to know. I am really grateful for everyone who is posting here. it is very important for us to express our feelings about this group to educate others.